By Alexia Elejalde-ruiz
Original Article Posted Here: http://mobile.philly.com/health/?wss=/philly/health&id=137436328&deliver=iphone&c=y&clmob=y&viewAll=y#more
CHICAGO – Peyton “Pete” Dralle wasted little time after he learned doctors could do no more to treat his throat cancer. He took spur-of-the-moment trips, got his affairs in order and, when he finally agreed to care at San Diego Hospice, he documented his life story.
Using a technique called dignity therapy, psychologist Lori Montross interviewed Dralle five months before his death about meaningful life moments, lessons he’d learned and those he wished to pass on to loved ones. She transcribed their audio recordings, then read the transcript aloud to Dralle, who edited it to his liking. The resulting 14-page “legacy document” was bundled into a leather binder for him to bequeath to whomever he pleased.
Dralle’s longtime partner, Lisa Amparan, remembers the sense of importance Dralle felt in being able to contribute something in his ailing state, and the relief he felt when it was finished, as though he’d gotten something off his plate.
“He got to tell his own story in his own words, and no one had to tell it for him,” said Amparan, 48, who this month marks the first anniversary of Dralle’s death. She keeps the binder, which she decorated with photos, on a bedroom bookshelf, and leafs through it when she misses him most.
Dignity therapy, an exercise that aims to give terminally ill patients a sense of meaning, closure and posterity in their final days, has experienced a surge of interest recently thanks to research showing it improves quality of life more effectively than other methods of end-of-life care.
A study published this summer in the journal Lancet Oncology found that patients who underwent dignity therapy were significantly more likely to report enhanced sense of dignity, better spiritual well-being and a sense of helpfulness to their families than those who underwent standard palliative care or client-centered care, which is when clinicians work one-on-one with a patient on current issues.
Earlier studies have shown dignity therapy also provides comfort to grieving families.
Study author Harvey Chochinov, a Canadian psychiatrist who developed the technique a decade ago and holds annual training sessions in Winnipeg, Manitoba, said he added training sessions this year in San Diego and Australia to accommodate rising demand. In December, he published Dignity Therapy: Final Words for Final Days, the first book to lay out a blueprint for his technique.
Although hospices for decades have engaged patients in reflective “life review,” what distinguishes dignity therapy is that it provides training and a framework for helping patients produce a tangible legacy document, and there’s empirical evidence that it’s beneficial, said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization.
“I think it’s a very, very, very notable and useful technique, and I hope it does get adopted by many of the practitioners out there,” Schumacher said.
Although published research on the effectiveness of dignity therapy has so far focused on patients with less than six months to live, a forthcoming study on the frail elderly shows similar outcomes, plus benefit to the health care workers who care for them, Chochinov said.
Chochinov, a psychiatry professor at the University of Manitoba, said he was inspired to learn more about the role of dignity in end-of-life care because Dutch studies had found “loss of dignity” to be the most frequently cited reason terminally ill patients pursued euthanasia to hasten death.
A host of factors can undermine dignity as people succumb to illness, including a loss of personhood, a loss of purpose and, prominently, perceiving themselves to not be appreciated by others, Chochinov said. Often there is fear that their lives won’t have a ripple effect.
By asking probing questions – “When did you feel most alive?” “Are there specific things you want your family to know about you?” – trained dignity therapists aim to capture what really makes a person tick. They also focus on generativity, a psychological term that describes the desire to guide the next generation.
“You can be in conversations with people where they may in essence be speaking to great-great-grandchildren they will never meet,” said Montross, who trained with Chochinov and now is assistant director of the Palliative Care Psychiatry Research Program at the Institute for Palliative Medicine at San Diego Hospice.
Unlike a lot of psychotherapy, which pushes people to confront painful issues of their past, dignity therapy meets people where they are, so they can address the topics they consider most pertinent and write their own stories.
Sometimes the conversations are heartbreaking. Chochinov remembers an elderly patient who said it was too late to ask for forgiveness after drinking away his relationships, but he wanted his grandchildren to know who he had been so that they could choose better paths. Another dying man wanted his wife to know it was OK with him if she fell in love with someone new.
Sometimes reconciliation is more important than facts. Montross remembers a patient who said nasty things about his estranged sister during their interview, but upon hearing his words read back to him, he revised his comments to be kinder.
Strikingly, the most prominent topic that graces every conversation is love, Montross and colleagues found in a study on the logistics of implementing dignity therapy in hospice communities, published last year in the Journal of Palliative Medicine. Another universal theme was lessons learned in life, the most common being to accept and acknowledge one’s own imperfections, Montross said.
With the clarity that comes with having limited time left, memories from a lifetime are distilled into the most essential, Montross said. Legacy documents, written in Q-and-A format, average 3,000 words, or eight single-spaced pages, her study found.
Shortly after Montross delivered Dralle’s freshly bound document, Amparan read it aloud to him as they lay together in bed. Initially nervous she might find out about some other woman he loved, Amparan instead got confirmation that this was a man she knew more intimately than anyone.
“It was like falling in love again and again and again, and remembering what the experience was,” said Amparan, who has since shared the book with a few of Dralle’s close friends.
Written just before his 75th birthday, Dralle’s document tells of the wanderlust that prompted him to leave home at 15; the persistence that was his key to success as a salesman; and the irony that his impending death made him feel more alive, more attuned to the feel of the grass under his feet, than ever before. With a self-deprecating humor undiminished by his illness, the former Navy man and avid golfer counseled his loved ones: “Be a person of your word.”
Dralle’s parting thoughts may have left a greater ripple than he realized.
“To be honest,” said Montross, who spent 10 hours interviewing Dralle, “he held more grace in his dying 90-pound frame than men twice his size or half his age.”
Can family help?
While everyone should be encouraged to have meaningful conversations with loved ones, dignity therapy is a technique designed for trained professionals who can handle emotionally intense interviews and respond appropriately if a patient’s sentiments are potentially hurtful to others, said Chochinov, its creator.
Not all patients should participate, Chochinov said. People who are so ill that it is affecting their cognition, or who are so severely depressed that it is warping their perceptions of themselves and their past, should not undergo dignity therapy because they could create distorted memories.
Home to Stay Senior Care Solutions is owned and operated by the Dubler and Skole Families and was started because of experiences they had with their own Families. In one situation Mom was living alone and had a fall. It was not until this fall that the family realized they were unprepared.
When it was time for their Mom to come home, she needed companion and personal care to assist her and prevent another accident. Like most people in this situation, they were confused and did not know where to go for help. It was this life-changing experience that lead to starting a home care company that is focused on enabling those who wish to stay at home and age in place.
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